Good weekend/ Interesting Neurologist appointment

Last week was our biannual neurologist appointment. This time I came prepared with a list of questions and concerns that I wanted to address.
1) Robbie is 4 years old and has a indentation on the top of head- why?
2) What medications are available- what do they do and when do people use them?
3) What other testing can we do to rule out other things?
4) Do you see any changes/improvements in Robbie?

1) Robbie's head just formed that way. There aren't any soft spots- so the indentation is not abnormal.
2) Ritalin and Adderall are used when behavior gets in the way of learning. There is no correct age- just when/if you feel it's needed.
3) Testing- MRI- to look at the structure of the brain. EEG- to look for any abnormal or seizure activity. Blood work- for Genetic testing and Celiac panel.
4) Robbie is still in the middle of the spectrum. No change. If and when his verbal skills improve than he may as well.

Why did I have all of these questions? Robbie was diagnosed with Autism over a year ago. The diagnosis was made by observing him. No clinical testing has ever been done. I do think he is autistic but I can't rule out other possibilities on top of that. Robbie clenches his whole body at times- could that be a mild seizure? Robbie learns something and forgets something else. He learns nose but forgets ears or he learns potato and call ketchup- chocolate. He's known ketchup for months. Could there be an abnormality in his brain function, structure- etc. Robbie's stimming goes from being manageable to borderline out of control. How do we handle that? His teachers have said to allow it for a few minutes and redirect so he understands he can't continually stimm but let him get what he needs out of it. That is hard. Think of the people you've seen who shake, jump, flap, mumble, what did you think when you looked at them? When anyone says hello to Robbie I have to prompt him to respond. Robbie is at the age where people are noticing he is different. And of course different is not always bad- but also remember how cruel people- especially kids can be.

This weekend I took Robbie and Lexi with me to a local Halloween costume swap I was volunteering at. There were quite a few kids running around and I was a little worried about how Robbie would handle it. He had a blast. He ran around with the other kids- not exactly playing with them, but happy they were there too. It was so nice to see Robbie enjoying himself and of course Lexi was happy- she's the easy one. The kids were kind. They tried to include him and continued playing when he didn't respond to their requests. We were at a venue he has become familiar with so I know that helped as well. Later that evening we went to our neighbors for dinner. It was a struggle to get Robbie out of the house going in the right direction- he wanted to jump on the trampoline. This was a new place with some new people and a dog. He was out of sorts for most of the time and it was a bit challenging. A few people did not know us but knew there was something different about our son- they told my husband later after Robbie, Lexi and I went home. All in all- I felt it was a successful day. I know the next time we go to our neighbors house he will do much better. It was also nice to go through a day and do normal family activities. Some easier than others but still normal, nice, good stuff.
A lot of testing coming up. No medication yet. Lots of therapy and many more hugs and praise. Robbie is working really hard. His sister keeps telling him- "good job Robbie" for everything he does. He is doing a good job. The best that he can!!

The Struggle continues

I thought my "baby proofing" days were over. A few weeks ago Robbie climbed onto a desk - where our computer sits- in the playroom- and took the cord from the blind. He put it around his neck- 2 times. Rob and I were in the family room- right next door- Lexi dropped a puzzle- making a loud noise. Rob went in to check on them. He was scared when he saw Robbie- Robbie was startled- and jumped from the desk. Thankfully - Rob caught him and removed the string from his neck. It left a red mark but thankfully again- nothing that needed medical attention.
This was an incredibly frightening experience. Our outlets are covered, knives are put in high cabinets- but I would never have thought to watch for a blind that takes skill to climb to. Just to be clear- no worries of suicide. Robbie has been wrapping his arms, legs and mid section with string, color forms and anything he finds. It is a sensory processing issue. Now I am cutting strings out of shorts- and cutting tags off of shirts because those bother him as well. He can't be unattended.
The good is- school seems to be going well and all the extra ABA he received over the summer has helped as well. I took Robbie to Stride Rite for shoes- which has always been a nightmare. He picked out shoes - let them measure his foot- and wore his new shoes out of the store. ( He did pick the same shoes he was wearing in the bigger size- but we got out without a meltdown.) He is talking more- and we have been taught some skills to get him talking and to calm him down.
The bad is- stimming, stimming, stimming. The school OT has told us Robbie has low muscle tone in his hands and core. This may cause some of the stimming- flapping- akward movements. They are working on building those muscle groups. I have not considered medication, but I am willing to hear what our Neurologist has to say. It's like he is uncomfortable in his own skin. Pull-ups bother him- but he won't wear underwear or be naked to potty train. Heat bothers him- he won't go outside for recess if it's too hot. Possibly bright sunlight bothers him too- but he hasn't expressed that. He has told me his stomach hurts- more often than not lately. His diet has been relatively the same- so we're trying to figure out what to remove.
Lastly- I have met a lot of new people in the last 2 months due to a new job. When I mention I have an autistic son the response is often- is he mild or aspergers? The answer is no. Robbie is Autistic- moderate- according to his neurologist. The hot new diagnosis is being on the spectrum- for kids that nothing else seems to fit. Robbie is not just on the spectrum- he's in the middle. I am becoming more familiar with what that really means every day. Lexi is so far beyond her brother verbally at 2 years old. I didn't understand what the doctors meant by lack of imaginary play for Robbie until Lexi. I didn't understand what his challenges were until Lexi. So once again- 1 step forward- 2 steps back. And Hope :)

A new (school) year!!

Today was orientation day for Robbie and us (his parents.) Robbie held my hand while we entered the building. He is generally pretty independent but stayed close while we waited to go into his new classroom. Springville is much bigger than his previous school and probably a little intimidating. Daddy met us in the lobby (it was his first day back and we were lucky he was able to join us) and we proceeded to Robbie's new classroom. 3 other children and their parents entered along with the teacher and aid after aid. 5 aids, 1 teacher, speech therapist, occupational therapist, case manager and nurse were introduced today. I felt nervous and giddy at the same time. Robbie will (hopefully) finally get what he needs. 4 children and 6 adults ( more children may be added as the year progresses) what a fantastic ratio. 2 other boys, both verbal and 1 girl who is non verbal. These children had been students the year before and their parents were very pleased with their progress. Robbie was ushered down to the OT room with the other children and all 5 aids as his teacher gave us a basic run down of the day. 1 and 1/2 hours of ABA in the morning and afternoon, speech and OT, library, gym, and music- woven into free spots and lots of interactive instruction. I can barely contain my excitement while I type!!
I am prepared for a few rough mornings. The bus is coming tomorrow to pick him up and I'm sure it will be difficult. But I can not help but pray for the best. A good year. Some real tangible improvement. A bit less stress and a lot more hope. That's not too much to ask for, is it??

10 things I wish for

10 things that I wish you would accept, no questions asked- written by a 22 year old with Autism and 10 more things I hope you can understand- written by me

1) I can be surprising good at one thing ( remembering conversations precisely as they happened many years after the fact) and surprising bad at another (like keeping track of receipts or remembering the procedure for filling a prescription.)
2) Just because I have the words to type it does not mean I have the words to say it.
3) I really do hate to melt down, especially in public. If there was another way out I would always take it.
4) I never play stupid. If I ask a question or say I don't get it, it means I don't get it. Please don't make me feel dumber by saying that I'm faking it, just because it seems straight forward.
5) What may be slightly bothersome to you, like the waistband on a pair of pants, can cause me to be a witch all day... or at least until i change clothes! If I'm crabby, it's because something is physically uncomfortable in the sensory realm of things. Until that thing changes, I will continue to be crabby.
6) I can't control my excitement over cats. So if you mention cats or point out a cat realize that I'm going to get excited. Let me enjoy it. A little happiness never hurt anyone, eh?
7) I am often completely unaware of self injurious behaviors. I scratch, hit, bite, and pick often, and much more frequently when I'm agitated for some reason. In the moment I don't know that I'm doing it; if made aware it's so compulsive that I almost physically can't stop myself. But using my head, obviously i don't like the results of it.
8) I am exactly the same person inside regardless of how engaged ( or disengaged) I am with the environment and others in it. Yes, you might have to change some things based on how I'm reacting in the moment, but please continue to treat me like the person I am.
9) Engagement and happiness do not depend on one another! I can be just as happy off in my own world as I am fully engaged with you. However, a lot depends on you, here. If I'm disengaged and you're forcing me to "act normal" then no, I don't feel very happy. If you're interacting with me in a way that I can be in that moment then I can be as happy as I've ever been.
10) While autism does mean that I am absorbed within myself (aut means self, after all) , that doesn't mean that I don't want you around. If you can come to me, rather than forcing me out of my world to come to you, then I'd love to let you in. There's a whole world in here: maybe you should check it out.

There are so many reasons I love this. First of all- It helps me understand my son a little better. Additionally it gives me hope that Robbie will be able to express himself as this young woman has done. Lastly it has given me the courage to write my 10 things list.

1) When you see a child "tantrum" in public please do not assume it is a combination of bad parenting and a spoiled child.

2) Please be understanding of the limitations we face as we try to decipher what Robbie wants/needs. Please don't compare Robbie to other children his age.

3) While I understand the thought process- I do not believe in God only gives you what you can handle. Everything happens for a reason.

4) If you have a possible solution to a particular challenge we face- I'd love to hear it.

5) Don't be upset if i do not take your advice regarding the solution because there is a high probability we have tried it, researched it, and used it previously.

6) Things that work today may not work tomorrow. Our issue today may not be our issue tomorrow.

7) If I am defensive regarding my son- please don't hold it against me. I am often scared, sad and tired. I am trying to balance the expectation of a " normal" life for Robbie and the facts I have learned about Autism.

8) The rate of Autism is increasing. 1 in 70 boys are diagnosed. I do not know why. I have a hypothesis- but do not not know why.

9) I am not Jenny McCarthy, or any other celebrity who had the good fortune to "cure" their child. The reality is they have hundreds of thousands of dollars at their disposal and there is huge possibility those children were not truly autistic to begin with. They could have suffered from many other things.

10) I love my son more than my own life and would not trade him for anything in the world. Rob (Dad) and I are doing everything we can to ensure Robbie is loved and will be taken care of for as long as he should need.

A note from my Mother- to all Mothers of handicapped children

I received this via email from my mother today. It touched me in ways I can't express. I hope another mother of a special need child reads this and finds some comfort!

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint, Matthew, Forrest, Marjorie, daughter, patrons saint, Cecelia, Rudgledge, Carrie, twins, patron saint..... Give her Gerard...... He is used to profanity." Finally, He passes a name to an angel and smiles. "Give her a handicapped child." The Angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" Asks the Angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She had to make it live in her world and it is not going to be easy." " But Lord, I don't think she even believes in you." God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness." The Angel gasps, " Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize yet, but she is to be envied, She will never take for granted a "spoken word." She will never consider a "step" ordinary." When her child says "Momma" for the first time she will present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." " I will permit her to see clearly the things I see....... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." And what about her patron saint? asks the Angel, with a pen poised in mid air. God smiles. " A mirror will suffice."

Summer is in full swing and Robbie is busy with "summer school" which consists of 2 hours of ABA and 30 minutes of speech or OT in the morning and 2 additional hours of ABA at home in the afternoons 3 days a week. As expected the home based therapy has been going really well- less distractions, and the school based programs have been touch and go. Lately the hardest behavior to handle is the hitting and kicking. Robbie does not like to hear no- as any child would. For Robbie- there are 3 strikes against him. He is a boy. He is a toddler. He is Autistic. For me the greatest challenge has become his size and strength. He is big for his age and very strong. This means- it hurts when he hits and kicks. The bruises on my legs and the shoe mark on my husband's back are the proof. The good thing is he is talking more and asking for more. However many times what he is asking for is not what he wants. Usually we can figure it out- but not always. Our ABA therapist had recommended we start collecting pictures of objects he may want. They use this in the classroom he will be attending in the fall. The reinforcement of the visual cue and verbal cue help. For example- sometimes he asks for a Popsicle but really wants a lollipop. He may ask for blue core ( from the movie Astro Boy) but means a Popsicle. However if you show him the Popsicles with out the box ( where the picture is) he may say no. It is frustrating for him and for us. We continue to work with him and add additional hours of ABA and silently pray for results.

What is Autism?

There is so much confusion about Autism. Autism is a complex neurobiological disorder that lasts throughout a person's life. It is sometimes called a developmental disability. The main signs and symptoms of Autism involve communication, social interaction and behavioral issues. Why is Autism such a difficult disorder? A child with Autism looks like every other child. They don't stand out like those with downs syndrome or some other disorders. When you have an Autistic child people really don't understand the challenges. Why is this perfect looking child having such a severe meltdown or not answering basic questions? It must be bad parenting, spoiled child, etc.

A child with Autism does not retain information as "normal" children do. Robbie needs continual prompts on basic every day skills. How to wash his hands. He knows how- but seems to forget the steps and looks for constant prompts and reinforcement. Potty training- he has repeatedly started off strong and then seems to loose it. He does not like to be wet but if he is not constantly reminded - will not sit on the potty- and then randomly will- without prompts. It is frustrating and makes me worry. The more I read about Autism and talk to other parents ( who are not millionaire celebrities) the more I realize how debilitating this disorder is.

We are in the process of setting up a trust for Robbie. What we haven't said out loud but I think of it everyday- the trust is for our son who may not be able to live independently- ever. We continue to make small advances in some ways and steps back in others. I am watching our daughter develop and she continues to amaze me. Her speech- many times in full sentences and her grasp of concepts. " Why is Robbie crying?" I have explained to my not yet 2 year old daughter that Robbie has trouble getting his words out and gets sad and frustrated. I never would have thought a child so young would comprehend that- but she does. And as she gets older I will continue to explain Autism the best I can. I'm still trying to figure it out myself.